Background

Our academic Post COVID-19 Condition (PCC) clinic in the Canadian city of Edmonton became operational in June 2020. Almost immediately, clinic patients began to relay stories consistent with stigmatization. Stigma has the potential to negatively impact the health of individuals, communities, and entire populations, and is now considered a social determinant of health.

Aims and Objectives

We developed a 40-item instrument (the Post COVID-19 Condition Stigma Questionnaire, or PCCSQ) with which to quantify PCC-related stigma, and undertook a prospective cohort study to determine the reliability and validity of this novel tool.

Results

Between May 2021 and May 2022, 198 patients were asked to participate. 83% consented; 76% completed useable surveys; 6 were excluded (no PCR confirmation of acute COVID-19; recruited prior to PCC diagnosis); 145 (73%) were included in the analysis. Reliability was > 0.90.Total Stigma Score (TSS) on the PCCSQ ranged from 40 ? 174/200 (mean 103; SD 31). Individuals with increased TSS were found in all demographic subgroups.  Increased PCC-related stigma was significantly associated with symptom burden, reduced self-esteem, reduced functional status, frailty, social isolation, loneliness, decreased quality of life, increased emergency department use, and unemployment due to disability.

Conclusions

The PCCSQ is a reliable and valid tool with which to estimate PCC-related stigma. Our results are consistent with the Health Stigma and Discrimination Framework (Stangl, A et al. 2019), and share many similarities to the stigma arising from other respiratory conditions such asthma, COPD, interstitial lung disease, lung cancer, tuberculosis, etc.